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Being Autistic and Dealing with Grief

Disclosure - Whilst this post may seem raw and maybe too honest for some that is because it is. It is to share the trauma I have endured the past 2 weeks and to explain how I have coped. Whilst death is the only certainty in life, it doesn't come with any less shock or pain or grief when it happens to someone who gave you life or someone you are close to.

My biggest fear for myself at the moment is that I am walking a tightrope. A tightrope where I know all my current behaviours on how to communicate and present myself to society are learned. I have worked hard to get to where I was 2 weeks ago pre loss. To have a support network, good people around me, not to drink, excel at work, not do drugs, not be reckless. I have the button I could press and do the exact opposite. Not be strong, be reckless, wallow, drink alcohol, have a breakdown, scream, cry, punch walls. It is an ongoing war in my brain trying to do what is expected of me and avoiding to do what I wish to do which is to go nuclear and self-destruct.

13 days ago I watched my dad for 3 hours fighting until he finally passed with his last breath. My worst fear in life watching a parent die in hospital became a reality on the 13th of June. What makes the death even more hard to come to terms with is on the 6th of June I went out and bought his fathers day present. We had a dad daughter date booked for the 7th of June at our usual time and place.

In 2019 this was something we made sure to do every month. However, due to Covid like many things that just stopped. I always looked forward to time alone with my dad. It was the only time I felt we could speak freely and just be ourselves, open, honest and respectful to each other. He was a very logical man and often made sense of things I was struggling with. I was really looking forward to seeing him on the 7th to tell him how my new job was going and sound him out on a few upcoming life changes I have planned. It was also going to be a chance to catch up on how things were with him and how the stepson's wedding was on the 30th of May. Knowing what I know now everytime I see a picture of him that day I think of him slowly dying not knowing what is around the corner.

On June 6th he messaged to say he was feeling like shite and would have to cancel our dinner as he wouldn't be much company for me. He didn't mention my birthday which immediately rang alarm bells for me as that was out of character for him to not reach out to me about what I wanted. However, on the 7th he said he had some antibiotics and would be fine for the 14th of June so to rebook. Then on Wednesday the 9th his wife massaged to say he was being kept in hospital (I didn't know he had even gone to hospital so this led to a lot of angst for me) we could only see him if he deteriorated and on the 13th I was phoned at 9am to get to the hospital. I remember crying in the car telling my partner I wasn't sure I wanted to see my dad how I was about to see him. I got there just as he was conscious and he was telling me to do something I know what it was and I looked at him and said 'I love you too' then I was told by the consultant he won't wake up again and he hung on until my brother got up from London at 1pm passing at 115pm. I just remember a wave of relief as he passed as he was no longer suffering and then anguish at the loss.

I googled being autistic and dealing with grief to try and get some tips on how to manage it. However, the results returned were how to help autistic children, nothing for adults.

It is important to note that everybody grieves differently however, I have definitely approached mine with much more logic and reasoning than others. I rang my doctors the next day and got some sleeping tablets as I knew sleep would not be possible or easy. The doctor also signed me off work for 2 weeks. I then called my manager and told her I wouldn't be in and what happened. She asked if she could phone me the next day to see how I was doing. I was told not to worry about work and that I was on compassionate leave.

Although my employer did not have to ring me I was glad they did. For me keeping in touch with what would be my normality helped me cope. I was helped to return to work earlier than the sick note (which the doctor said I could) and it was a good break from what was going on.

I also booked an appointment with my counsellor (I pay for a private counsellor) that same week and this again helped me talk about it. I decided when I was ready to share on my socials and started to do things I was in control of. This again helped me cope. I tried to train/exercise to some degree and keep it on the same days again more to give me a sense of grounding and control.

It is also important to note that this is not the first time in my life I have lost my dad. I lost him at 11 when he left the family home to live with his now widow. I did not speak to him for 7 years, got back in touch with him at Uni but although he had all my details he expressed how busy he was with his stepsons and wife (yes cutting). I was not diagnosed autistic back then and honestly was a mess for 15 years. It was only at 26 I began to speak with him again, however, I always maintained a distance from his widow and her sons out of respect for my mum and he respected that the relationship I wanted was with him but I would tolerate the family he chose.

Since his death I have been told by his widow that they wanted me to put more effort in. That they were not happy with the distance I kept from their family events. To me I was not about to upset my mum by playing happy families with people I did not respect or feel comfortable with. I have a strong moral compass and I have absolutely no regrets about this, none.

I had forgiven my dad in his life for his choices and the conversations I had with him in private will always be kept just that, private. So to be told since his death that because of my autism I am blunt, because of my autism I am self referenced and struggle with communicating was just insulting. It meant I had to advocate for myself and remind my dad's widow I am autistic not a person with autism, that just because she was a counsellor she was not an expert in the subject of being autistic and to stop referring to my dad as having aspergers. I was added to a Family group chat the day of my dad's death which was created in May 2019. I felt like a consolation prize, couldn't navigate the group chat and left it. I was then told I needed to be a part of a group and I said NO. I do not communicate well in whatsapp group chats. I find the tone of it too hard to read and I just upset one person or another.

The things I have had to do to navigate this grief bearing in mind being autistic I really do struggle to understand my feelings are to use my logic. Anger is my biggest enemy at the moment. I am angry about a lot of things and with a lot of people. It is exhausting to let anger consume you so I am trying not to let my mind go there. To go to the fact I never got my last chat when the rest of the family did just the week before, to be told he went to work on the Monday when he had cancelled tea with me on the Sunday before.

However, the thing I am most angry about is having to advocate for myself to people who know nothing of being autistic other than the stereotypes. I am often told I have no empathy. It bores me to tears. I chose to be cold because I have so much empathy for certain people in situations that I am unable to handle the feelings it brings.

I have accepted death. It made sense to me what the consultant said. There is no point in bargaining for me.

What I have found helpful in dealing with this sudden and ultimately tragic loss is;


- Stim lots so for me this is exercising and driving with my music loud.

- Where you can try and keep some normality. I do not function well without routine however, I took time off work to give my brain time to heal. I asked my managers to call me to keep me connected with my normal life.

- Reach out to friends in your own time. Remember if you post anything like this on facebook or other social media you do get bombarded with messages so only do this when you feel ready to.

- Take time to process what has happened. It is so easy to just throw yourself into your normal routines.

- I have found that because I have advocated for myself with my employer, communication with my managers is easier in this stressful time and other colleagues are giving me space.

-Set clear boundaries with other family members or in my case step family members who do not know you so well. This could be by advocating for yourself or explaining what you wish to happen and asking for clear explanations if that can't

- Avoid masking. Initially I was behaving how I thought others would want me to but ultimately the grief is yours and yours alone.

- Understand NTs grieve differently and often follow the 6 stages of grief. I have come to acceptance first and am trying to deal with the other stages in a more logical way.

- I am trying to stay positive and focussed. I have come to terms with not having that last meal as I know he would have appreciated the effort I made just by booking it.

- My sensory profile to noises is greatly heightened and therefore I am having to carry my Autism Alert card around and use the tools I already have to protect myself.

- Distance yourself from people who cause you stress. I now go through my family members to communicate with my dad's chosen family and have stopped all unnecessary communication. My view is I didn't play happy families in his life and won't in his death.

- Remember the person how you want to. I will always remember him as my dad before I was 11. The best dad I could ever ask for.

This loss is hard, really hard. I have accepted his death but still wish for a text or an email. Ultimately I refuse to live my life consumed by grief. I have seen too many of my friends stuck with grief. My partner, friends, mum and employer particularly my managers have been my saving grace. They all understand me, allow me to speak and help me. I am not brave or strong or any of the other things I have been called. I am a human being dealing with the loss of another human being who ultimately gave life to me and whose life will live on through me.


1 Comment

Unknown member
Jun 27, 2021

Thank you for providing a list! Especially your advice to "remember the person how you want to" which is often so difficult to do but absolutely valid.

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